Illness and Identity: Redefining Who You Are When Your Health Changes

The house I grew up in will be sold in a few days time. As I go through boxes of childhood memories stashed away in the attic and wander the half-empty rooms I spend such a big part of my life in, I can’t help but think how much of our identity is tied to our circumstances.

The places we live in, the people we surround ourselves with, the roles we play and the things we do, they all become a part of who we are. We literally define ourselves by our profession and habits. One of the first questions we ask strangers is: “So what do you do?” And yet, we usually don’t answer with a list of our activities, but with statements like: “I am an administrative assistant/nurse/graphic designer.”

But when you become severely ill and lose the ability to work, socialize or do the things you love, how we label ourselves and interact with the world changes.There’s an erosion of self where everything you used to think about yourself is challenged by the new limitations of your body. Would you still describe yourself an outdoorsy, fun-loving teacher if you’ve been too sick to be in a classroom of nature for months? But if not, then who are you now that chronic illness chips away at the things that defined you for so long?

A lot of psychological tests measure personality traits by asking about your attitudes, tendencies and preferences, assuming that your past behaviour predicts your future behaviour. But what if there’s a discrepancy between how you see yourself and the behaviour that everyone else sees? What if there’s an insurmountable gap between what you would do if only your body would cooperate and what you can actually do?

Let’s say that you’re naturally extroverted and enjoy big groups of people, lively parties and adrenaline rushes. But now that you’re chronically ill, you can no longer stand being in busy places, because it gives you a massive headache and trembling legs. You need a lot more alone time to recover from physical exertion and mental stimulation. Does that mean that you’re more introverted now? Your behaviour might suggest so, but what if inside you still long to dance all night long and chase highs bungee jumping? How do you bridge that gap?

This may sound like a pure theoretical discussion, but in my experience, having those conflicted feelings can cause a lot of frustration and sadness, because it touches you at the core. Having to rethink who you are deep down and how you define yourself to the outside world can make it even harder to accept the realities of living with chronic illness.

Partly letting go of who you were before your illness set in is unsettling and hard.

But strangely enough, so is letting go of unconscious beliefs about your sick self.

I’ve never been a sporty or bendy girl, but getting juvenile rheumatism definitely ingrained the idea of me being inflexible in my mind. A few weeks ago during yoga class, I noticed that some poses suddenly felt easy. I didn’t experience the stretching discomfort I’d usually feel and could go deeper in the poses than anytime before. At first I thought I wasn’t performing them right, but my alignment appeared to be correct. Then I figured it must have been a fluke, an accidental good day. It was only when I had the same experience of ease and flexibility during the next lesson that I realized: despite all the progress I’ve made health wise over the years, I still unknowingly saw myself as stiff, physically weak and vulnerable.

And you know what? That’s not completely true any more. Ok, I’ll never be as bendy as Tara Stiles, but there’s a world of difference between the housebound teenage girl I used to be and the “healthiest sick woman” I am today. Back then, I could only dream of doing the things I do now.

But even though two decades have passed and I’ve gone from the Belgian countryside to Dutch urban life and adopted the roles of wife, mom and psychologist, I still unconsciously carried that idea of ‘the helpless sick girl’ with me. Like a woman who lost a lot of weight but still sees a ‘fat person’ when she looks in the mirror.

Now that my body has grown stronger, it’s time for my mind to fully catch up. So as I say goodbye to my childhood home, I’m also leaving some old thoughts about myself behind.

Because no matter if you’re recently diagnosed and grieving your old self or you need to let go off limiting beliefs on your journey towards better health, every inner transformation requires a new narrative.

And the only one who gets to define who you really are, with all your baggage, flaws and perfect imperfections, is you.

So be the hero of your own story.

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“So, who am I now? Turns out I’m still me, with a metaphorical ‘work in progress’ sign around my neck.”

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About me

I’m a psychologist living with chronic illness. I want to help you feel as energetic, symptom-free and happy as possible, by showing you how to create lasting health habits and by giving you advice on how to cope with (chronic) health problems.